On Wednesday 20th May, 2020, The Action Foundation and Kenya Institute of Special Education (KISE) convened an online dialogue on Therapy Support for children with disabilities. The webinar was moderated by Lydia Chege, the Research, Assessment & Partnerships Manager at KISE. The participants in the webinar included Parents/Caregivers to children with disabilities, NGO leaders, Disabled Persons Organizations (DPOs), Special Needs Education Practitioners, Individuals and Therapy professionals. The webinar sought to:
- Identify the gaps in direct therapy provision during this COVID-19 period
- Explore practical alternatives to direct therapy during this period
- Establish whether there have been check-ins on beneficiaries at organizational level & how they are coping and the mental well-being of primary care-givers
- Chart a way forward for resumption of therapy services for the communities at organizational level.
This webinar was the first in a series by TAF and KISE on ‘COVID-19 and Therapy Support for Children with Disability’
The context
Before COVID-19, access to rehabilitation services for children with disabilities was a challenge for parents/principal caregivers in informal settlements.
Information regarding the nature, availability and distribution of rehabilitation services for children with disabilities across developing countries is scarce, and data that do exist are of variable quality.
In Kenya, the 2018 Sector Policy for Learners and Trainees with Disabilities covers eleven categories of disabilities and special needs. This includes those with; Hearing impairment (from hard of hearing to deafness), Visual impairment (from low vision to blindness), Deaf-blindness, Physical impairment, Intellectual and developmental disabilities, Specific learning disabilities (dyslexia, dyscalculia, dysgraphia), Cerebral palsy, Speech and language difficulties, Multiple disabilities, Autism and Albinism. Reports of health-based rehabilitation services have in the past revealed serious limitations in coverage and capacity.
A Previously Dire Situation Made Worse
The COVID-19 pandemic situation has served to exacerbate the existing challenges around access to direct therapy. The moderator noted with concern, that for about two months now, direct therapy has not been happening; individuals and organizations have had to adhere to the Government of Kenya guidelines, directives and mitigative measures in response to COVID-19 pandemic.
The issues emanating from this were highlighted, and which include concerns of regressions, lost milestones for the children, panic for the part of the principal care-giver especially when there was so much previous progress and now the parent/primary caregiver is with the child and at a loss on how to attend to the therapy needs of the child. Thus, it was found necessary to convene the meeting to address such emerging issues and chart a way forward for therapy support during this period.
A Glimpse of the present Reality
Participants shared their stories on how they are engaged in therapy at a personal and organizational level in light of covid-19. This took the angle of at organizational level and at the household level for a parent/primary caregiver to a child(ren)
In the webinar, a parent shared her experience of how overwhelming it has been the past two months. She has to attend to her children at home, whilst trying to strike a balance between being a parent, teacher and a therapist while still being able to go about other daily activities. Employees with children with disabilities may no longer have access to the childcare or support they need, with significant impacts on their capacity to work and on their psychosocial well-being.
Alternatives to providing in person occupational and physiotherapy services such as conducting therapy on a child for a parent/caregiver following guidelines provided on videos in reality is not inclusive as most parents don’t have smart phones let alone internet. An occupational therapist, shared insights on the issue and went ahead to really assert that for a person with no background in the special needs field, it can be quite difficult to do therapy on a child. And more so when it’s a parent/caregiver, it can be really overwhelming and emotive. Collaborating with parents/caregivers during this time is critical. However, restrictions on movements and public gathering is a key impediment to such in-person interactions.
Calling for solidarity and a Coordinated Response
While we acknowledge that there are structures that are in place in various organizations that are involved in rehabilitation practice, there is still much that needs to be done to ensure children with disabilities deserving therapy services get to access it. We cannot afford to allow room for retrogression even in the face of COVID-19 pandemic. The key role of principal caregivers/ parent cannot be over emphasized and according them the necessary support is critical. Their mental well-being particularly is key for them to provide therapy to their children.
This initial meeting was quite resourceful and having set the momentum, will be followed by other such engagements. It is our hope that these concerted efforts towards ensuring access to therapy services for children with disabilities will serve to provide a platform for meaningful engagement and action on the matter.